hello

[douglas]

i found this forum because i am searching online to find some help and support on dealing with some of my side effects. a few times this site helped. that's why i am here.

i am 40. family and kids. been living with diagnosed epilepsy for about 10+ years now. i think i have always had it -- petite mals - but i didn't know what they were. i thought everyone had them i guess. i had my first grand mal when i hit about 30. i was on dilantin for the longest time. it made my think slow. but no grand or petite mal seizures while on it. the neurologist took me off dilantin and i was seizure free for about a couple of years. then the seizures came back stronger than ever. so i had the option of going back on dilantin again. a family member who is a biotech guy recommended keppra as a possible alternative because it is supposed to be easier on the body and organs. i ran it by the neurologist and he seemed excited to put me on it. he did warn be some patients report 'behavioral changes'. so i have been on keppra now for about a year or year and 1/2.

at first i was very stressed out about taking keppra after reading all the things about it and side effects. in retrospect, it seems that my side effects didn't kick in until i was on it for a good 3 to 6 months. i experience what the nero called 'behavioral changes'. hostility. quick to blow a fuse and get mad. depression. irritability. and it would seem to cycle between those things. i started taking b6 and b12 vitamins regularly and i think it seems to be helping a bit.

lately, i have noticed i am having trouble sleeping. it seems to be getting worse. it used to be that i was averaging one bad night of sleep a week. but i am noticing that slowly it seems to be progressing worse and i am going to two nights of insomnia a week now.

does the keppra work? i am not sure. i haven't have grand mal's since i have been on it. however, i have had petite mals. i used to get a lot of petite mals at the beginning on my keppra treatment. they seem to have subsided now. now i just seem to be dealing with the side effects.

 

[Nakamova]

Hi Douglas, welcome to CWE!

I'm not on Keppra, but I've found the the AED meds in general tend to have side effects that modulate over time -- there are some effects that you feel right away, or during transitions in dosages, and others that fade away after a few months. And others still that show up after 3 months. The insomnia may well be Keppra-related. I recommend that you do what you can to deal with it (progressive relaxation, exercise, melatonin, etc.) but if it continues to escalate and become intolerable then mention it your doc and consider switching.

Best,
Nakamova

 

[neilB]

Hi Douglas,

I am on both Keppra (2500mg/day) which is new and Tegretol (400mg/day) which I've been on for about 7 years. Before that it was Dilantin and something else and neither of them seemed to work. At first with the Keppra everything seemed fine and it's been about 2 and 1/2 months so far. It started slow at about 1000mg/day up to today. The problems I'm having now are bizarre dreams/nightmares and memory loss seems to be getting worse. My Keppra levels are unusually low as well. I've noticed "slight" behavioral changes but I am going to rely more on people that know me to make that call. I'm also thinking about changing neurologist again since my faith in her seems to be all but gone. Feel free to ask me anything and glad to have you on board. :cheers:

Neil

 

[douglas]

hi neil.

in my case, they cant find a cause of the seizures. i have had 3 or 4 MIRs and 3 EEG and CT scans. the neurologysts dont seem to know what to do other than keep you on meds in that case. i have gone through about 5 neurologysts in the 10 years. 3 were just jerks. the 2 i stuck with because they are nicer and seem more sympathetic. (they are also a little older doctors compared to the others).

my story is, i had my 1st grand mal at 29. they kept me on dilantin for a year. ten took me off. then i had a 2nd grand mal. they put me on dilantin for about 3 yrs. then took me off. the theory being that 'in some cases, some people who are on dilantin for a few years and then taken off dont get seizures again'.

anyways, i was seizure free for about 2 or 3 years and then the seizures came back one day out of the blue. i had 2 very bad grand mals in 2 days. during the time i was off meds and seizure free, i was still driving regularly. i was driving my wife and son and could have had a seizure behind the wheel and killed them and someone else or anther family on the road. i am still pretty pissed at the neuros for letting that go on for almost 3 years. i count myself very lucky that nothing tragic happened.